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Parents Devoted To a Disabled Child

Posted: 2004-01-08

In the 1950s and 60s a group of pioneering parents shunned institutionalizing their developmentally delayed children. Now, in old age, they face challenge and heartbreak.


PITTSBURGH -- Donald Tullis, 84 years old, wakes each morning in the room he shares with his youngest son, their beds only feet apart.

He ties his son's tennis shoes, helps him with his pants and suspenders, and shaves him. He makes cereal the way Tim, 49 and autistic, likes, with water rather than milk, and packs a hamburger, apple and cherry pie in a brown paper bag. At 8:30 a.m., a van arrives at the curb and honks, ready to take Tim to a training center for developmentally disabled adults, where he learns how to fold his clothes and write words on a chalkboard.

For a few hours it is quiet in their small apartment, save for news updates from the radio or TV, or traffic noises outside. While his son is away, Mr. Tullis rinses the dishes and makes their beds. When Tim returns shortly before 3 p.m., Mr. Tullis pops some popcorn for his son and gives him the day's junk mail to sort through, maintaining the routines so critical to those with autism. They share a quiet dinner in a tiny kitchen, Mr. Tullis reminding his son to use his spoon for mashed potatoes and fork for meat. Both father and son are big men, though Tim is far larger than his father, having outgrown the 44-inch-waist pants that Mr. Tullis now wears.

If Lawrence Welk is on, the two watch it together, Tim smiling and rocking in his favorite rocking chair, so worn that it's held together with a wire hanger and nails. On other nights, they listen to records of Scottish and Irish singers, or read. Mr. Tullis prefers mysteries, his son magazines, flipping through them for both the pictures and the occasional familiar word.

Mr. Tullis's wife, "the Missus" he calls her, a tiny lady named Gert, died a few years ago. Since then, Mr. Tullis has assumed total care of his son. Tim adores his father, his few sentences often about Daddy. Likewise his father, a soft-spoken man, beams when he talks of the progress his son, once declared a "mental defective," has made. A few years ago, Tim received an award and plaque for his spirit and determination from the Ross Center, where he goes each day. His father, then 81, attended his son's first award ceremony.

His biggest concern is what will happen to Tim when he dies. Although Mr. Tullis doesn't suffer from any major medical problems, he must deal with the normal course of aging. He shuffles when he walks, wears a hearing aid and has arthritis, which swells his hands and causes pain in his back. "Eighty-four is getting up there," says Mr. Tullis. "The hard part is that it's going to be harder on him than me."

After a lifetime of caring for their developmentally disabled children, a generation of parents are reaching the same painful crossroads, realizing that they can't do this much longer. During the 1950s and 1960s, these pioneering mothers and fathers were among the first to shun institutional care, insisting on a place for their children in society rather than on its fringes. They were a major force behind laws requiring schools to allow disabled children into mainstream classrooms or to set up special programs for them.

In raising their children at home, these parents had little support from outside organizations, leaving them largely on their own to be parent, nurse and teacher for children with then-baffling conditions. They saved the government hundreds of millions of dollars in expensive care. They also set the standard that subsequent generations of parents have embraced. Today, about 76% of the 4.3 million people with developmental disabilities live at home, a quarter of them cared for by a family member who is at least 60 years old. Most of the rest live in supervised settings or on their own.

That dedication enriched lives and created a symbiosis between parent and child that strengthened over time, but that time likewise makes untenable. Now in their 60s, 70s and 80s, some with weak hearts or limbs and others coming off bypass surgeries or chemotherapy, these aging parents are realizing that carrying a disabled adult child down steps is dangerous. Tending to breathing tubes throughout the night is exhausting. These parents' lifelong concern with their child's mortality is coupled with a growing awareness of their own.

Limited Options

Yet for the most part, these 670,000 older parents -- those 60 years plus -- continue because they are afraid not to. Relinquishing care of a fragile child prone to violent seizures or terror of the unfamiliar is difficult even as it becomes physically harder to provide. And in spite of the progress of the past 40 years, there are still limited options for the disabled once they pass through mandated education programs, which generally stop when they reach the age of 21.

Nationwide, 80,000 families are on waiting lists for government-funded residential services such as in-home help; some have been waiting for a decade. The figure doesn't include untold others -- by some estimates 40% of caregivers -- who haven't asked for service because they don't know it's available. In some cases, bad past experiences keep families from reaching out for help. Years ago, Tim spent three months in a state mental-health institution because he was eating uncontrollably; he came home with unexplained sores and bruises. He apparently had been bullied by others there who ordered the then-26-year-old man to tie their shoes.

The tandem needs of an aging parent caring for an aging disabled child are beginning to draw attention. The Administration on Aging of the U.S. Department of Health and Human Services and The Arc, a nonprofit organization for the developmentally disabled based in Silver Spring, Md., are in the early stages of developing a program to give help and counseling for older caregivers. In the meantime, these parents continue dressing, bathing and feeding their children, concerned more about their offspring's welfare than their own needs.

"There are a lot of quiet heroes and heroines out there," says Diane Len, of Family Links, a nonprofit agency based in Pittsburgh that coordinates government-funded services for the Tullises and others like them.

Their paths cross over coffee in the cafeteria of the Ross Center, which works with their adult children, about 40 in all, who are severely developmentally disabled. Martha Misson, a widow and 79-year-old stepmother, had triple bypass surgery in 2000 and cares for her 44-year-old stepdaughter, who has seizures so severe she must wear a motorcycle helmet at all times. Frank and Susie Simons, both in their 60s, must spoon-feed soft foods to their 36-year-old son. The O'Sheas, Robert and Catherine, who are in their late 60s, installed a lift above their quadriplegic son's bed because Mr. O'Shea has a weak heart and can no longer lift him. Frank Hricak's wife, Alice, 78, dresses and bathes their 49-year-old daughter, who suffers from an undiagnosed mental disability. Mia Ramaeckers waits until her 72-year-old husband, Martin, comes home at 9 p.m. from a part-time job cleaning offices to take their 37-year-old daughter, her body curved like an S, up to bed. "It is easier with both of us lifting her up," says Mr. Ramaeckers. "She's not getting bigger. We're just getting older."

In many ways, these lives reflect the great successes of technology and medicine. Both parent and child are living longer than previous generations. A child with mental retardation today has a life expectancy of 66 years, compared with 19 years in the 1930s. In the past, a child who could not swallow or was prone to seizures would have been raised in an institution. With portable breathing machines and drugs to help reduce seizures, they can live at home.

Such is the case of Mary Lou Ramaeckers. Tiny Mary Lou, whose toothy grin fills half of her delicate face, spends much her time at home lying on a mat in the family room of their two-story brick home, where she watches "Wheel of Fortune," a blanket tucked around her, a pillow under her head. Windmills from the Ramaeckerses' native Holland line the walls.

Doctors have never been able to identify her disability. When she was about three years old, she began walking ducklike on her toes. Doctors operated, pulling her muscles down to help her walk flat-footed, and thought she might have cerebral palsy. They later ruled that out. When she began shaking uncontrollably, they said she had a rare neurological syndrome. They later concluded she had an undetermined metabolic disorder. When her spine began to curve from scoliosis, they said it made no sense to operate. "They thought it wasn't necessary because she wouldn't live long," says Mrs. Ramaeckers. "She was going to be a teenager and that was it."

Mary Lou's body grew twisted from the untreated scoliosis, and her muscles deteriorated. She weighs about 75 pounds, though it's hard to tell how tall she is because her body won't straighten out. She can't walk, talk, sit up on her own, swallow or eat solid food. A dozen years ago, doctors suggested a nursing home. Her parents said no.

"Look at her," says Mrs. Ramaeckers, nodding to Mary Lou. "A girl who can't talk, who can't push a button for help. What are they going to do with her? She would just lie there. You put her in the best nursing home you want, even if you have the money, and she is not going to be taken care of like she is at home."

It's not just physical care they provide. Mrs. Ramaeckers dresses Mary Lou in color-coordinated outfits, often in her daughter's favorite purple, and styles her hair when they go out to dinner and to the movies. Wanting her daughter to be well-mannered, Mrs. Ramaeckers tells her to smile to convey thanks, sensing her wide grin warms and disarms those who might be uncomfortable seeing her. "Give them a smile," she coaxes. "It's what you can do."

Her parents alone can sense almost imperceptible messages from their daughter. Mary Lou glances in a certain direction to tell her parents when she is hungry, has to use the bathroom, or wants the TV station changed. When Mary Lou has a painful muscle spasm, her mother says her eyes go blank. "I tell the doctors, 'Her eyes go, she leaves me,' " she says. "They don't know what I mean."

They detect the slight gurgling sound amid conversation and laughter, and take turns suctioning saliva from the tube that acts as Mary Lou's trachea so she won't choke. The sound wakes them up several times each night.

"It's just like having a new baby. You hear them," explains Mrs. Ramaeckers -- only she is 70 years old, not a new mother. "You do slow down, but you manage," she says.

Mr. Ramaeckers dotes on Mary Lou, slipping her a dollar bill when she goes on a field trip with others at the Ross Center to the Dollar Store, and teasing her gently to make her laugh. "You gain another ounce and I'm through with you," says the slight Mr. Ramaeckers in a mock threat, as he carries his daughter up 16 steps to her bedroom. It is her favorite room in the house, with paintings of hot-air balloons and peacocks on the wall and blue Smurfs resting on her bed. She seems to like it better when her father carries her, giving him a smile and making a noise when her mother does. Mrs. Ramaeckers says she hugs Mary Lou tightly because she is afraid of dropping her.

"We are lucky," says Mr. Ramaeckers. But he worries about the future. "We've got another 10 years. Then what? Who will take care of her?"

They haven't asked their other four children to do so. "They probably would, but it's not fair," says Mrs. Ramaeckers. "They have their own family, their own life. You don't want to put the burden on them."

Few would criticize this generation of parents for choosing a selfless yet ultimately unsustainable path. Many might say that the intangible benefit of being at home and surrounded by comforting smells and sounds, family and friends, is itself good medicine. Still, those who work in the field of developmental disability gently encourage parents to make plans for their child for when they are gone, if only to ease the transition for both. Too often, they note, an older parent dies and a middle-aged child with the functioning level of a 3-year-old is left overwhelmed dealing with the loss of both parent and home.

"With this population, you have to do some planning. There's too much trauma in a new setting," says Prof. Tamar Heller, who heads the Disability and Human Development Department of the University of Illinois at Chicago.

Especially for a person like Tim Tullis.

On Their Own

It's difficult, all these years later, to pinpoint just when the Tullises first realized something was wrong with Tim, the youngest of their four children, who was born in 1954. Mr. Tullis says he was a beautiful baby with deep dimples. Tim walked and seemed fine until he was about 3, when his parents noticed he wouldn't talk. They sent him to school but he was dismissed after two months. At age 7, Tim was declared uneducable and mentally retarded.

Mr. Tullis, who grew up on a cattle ranch in Nevada, and Mrs. Tullis, from a small town in West Virginia, were left largely on their own to deal with the bewildering condition of autism. Even today the disorder, marked by hypersensitivity, obsessive behavior and an inability to relate to others, isn't fully understood.

Schools weren't required then to accommodate children with developmental disabilities. Still, Mrs. Tullis remained hopeful, having Tim tested every year to see if he could attend school. Each year, he was refused, and his mother brought him back home to their yellow clapboard home on Blossom Way, and gave him books and pencils and paper. When Tim was in his early 20s, his mother got so frustrated and angry that she went to court and persuaded the judge that Tim needed a treatment program. The judge ruled that the county had to admit him into one.

By then, it seemed as if it was too late. Tim had never been in group settings before. He was kicked out of the program for being disruptive. "At present there is no place for Tim except to remain in the care of his parents," one psychiatrist concluded. "Community resources available to Tim are virtually non-existent."

Tim's parents did what they could on their own to fill his life. They gave him books and magazines. Mr. Tullis says he never made a lot of money, maybe $6 an hour at his peak, driving equipment for a construction company. But every summer, they took a long car trip with Tim, eventually seeing nearly all 50 states, staying in roadside motels until their money ran out and taking pictures until the camera got lost. They visited Yellowstone's hot springs, Hell's Half Acre in Wyoming and Mount St. Helens months after it erupted.

Several years ago, Mrs. Tullis was diagnosed with Alzheimer's and began acting strangely, wearing socks in the bathtub and forgetting how to sign her name. She didn't recognize Tim and wondered who this big person was. Taking care of both his wife and son was difficult, but Mr. Tullis managed until one afternoon, when his wife fell off the back porch and broke her leg.

From the hospital, doctors transferred her directly into a nearby nursing home. Mr. Tullis would get Tim ready for school, spend the day with Mrs. Tullis, then return in time to greet Tim from school and make his popcorn. His father never took Tim to visit his mother at either the hospital or nursing home, for fear he wouldn't leave. She died about five years ago. For a long time after, at unexpected moments, Tim would blurt out, "Mommy in the hospital." When he and his father got ready for weekend drives, Tim would say, "Wait for Mommy."

Their apartment misses touches she might have lent. Plastic supermarket bags dangle from lamps. Two umbrellas lean against each other in a bookless bookshelf where 80 years' worth of photographs are stuffed in envelopes. Mr. Tullis washes his laundry in the bathtub because there is no washing-machine hookup in his apartment. This past Christmas, the artificial tree stayed in the cellar.

Mr. Tullis takes Tim on outings in the family's Dodge Caravan. On weekends, they pick a direction and head out to the rolling Pennsylvania countryside for the day. Tim sits in the back seat, his hands folded across his expansive stomach. Little is said. If Tim sees a barn, he says, "Mail pouch, big barn," remembering the chewing-tobacco advertisements that are often painted on barns. They stop at Arby's or Wendy's and eat lunch in the van on TV trays to avoid the crowds. On Christmas day, the other Tullis children visit their apartment, but one family at a time so as not to overwhelm Tim.

His youngest daughter, Linda Biegenwald, says her father has never asked his children to take care of Tim when he's gone, and it's not a comfortable subject for any of them to broach. "You don't like to speak about parents dying," says Mrs. Biegenwald, who is 50 and has two daughters living at home, both of whom suffer from mental disorders. "I don't know if I could do it." She hopes, along with her siblings, that Tim will be able to live in a supervised residential program. "No matter where he is, we'll be as active as possible in making sure Timmy is taken care of."

For now, it's up to his father. "His dad takes very special care of Tim," says Sister Jeanne, Tim's counselor at the Ross Center.

The Ross Center tries to help where it can, but it's under budget pressures because of federal and state cutbacks in funding. Staff members do more than is required. Sister Jeanne patches holes in Tim's pants, knowing an aberration in the form of a small rip can unnerve someone with autism. She found a new apartment for the Tullises when the old one had mold growing on the walls.

Sister Jeanne, who is also a member of the School Sisters of Notre Dame order, works patiently with Tim, trying to get him comfortable to new people and experiences. She made six trips with him to an office building to have his photo identification picture taken before he would get out of the car, go inside and have the picture snapped. Weeks in advance of each new outing, she compiles construction-paper booklets to review with him. There's "Let's Go to the Bookmobile" and "Tim's Physician" and "Tim Buys a Plant."

The efforts have paid off. When Tim first started coming to the Ross Center, he hid in the closet and could tolerate only 15 minutes of being at the center before he had to be taken home. Now he stays for the full five hours. He demonstrates a fascination with words and likes to type groups of nouns thematically with no space: FRITOLAYBRACHS. SPIROAGNEW. Once described as aggressive, he gets up in the classroom to offer his seat to someone who doesn't have one. In stores, he keeps his hands behind his back so as not to disturb anything. This past Christmas at a staff member's house, he watched a train set, hummed softly to himself and ate stir-fried chicken for the first time.

In a recent breakthrough, Tim allowed Sister Jeanne to comb his hair, something only his father had done before.

The big challenge now is to prepare Tim to spend a night away from home -- the first step to readying him for life without his father. Mr. Tullis is supportive of these preparations. "I never thought about it before. He was just here and that was that," he says. "Now we have to make provisions for him to go on his own ... Pretty soon, you know, I won't be around for him to come home to."

On a recent afternoon, Marianne Badaczewski, who provides care for disabled adults to give their caregivers a rest, welcomed Tim into her home. Well-coached by Sister Jeanne, she had popcorn waiting on the table for him. One of her six children sat with Tim and drew pictures with him. He ate his dinner quietly with the family, but was ready to get home when the sun set. Sometimes in his visits he is anxious and says, "Go see Daddy," she says, but seems to be getting more comfortable every time.

In a few weeks, Sister Jeanne will put together a small suitcase with washcloths and a toothbrush. That way, Tim can wash his face and brush his teeth after dinner at Mrs. Badaczewski's house, all things that he has done only at home with his father's help. And for when Tim is ready, an unused day bed in her son's room is made up and waiting for him.

Write to Clare Ansberry at clare.ansberry@wsj.com

This article appeared in the Wall Street Journal , January 7, 2003.

http://online.wsj.com/article/0,,SB107343057175718200,00.html?mod=home%5Fpage%5Fone%5Fus

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